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Maya's Story

Maya
quote from Maya

This is a transcript of a video from the Growing Up with Epilepsy Web site. For more information visit http://www2.massgeneral.org/childhoodepilepsy.

Receptionist: Take a left. You'll see them halfway up on the left.

Jay: Thank you.

Maya: My name is Maya, and I am seven years old. I came to the hospital today for my EEG.

Clemencia: Seventeen.

Maya: Yay, we're here.

Jay: Our daughter Maya was diagnosed with epilepsy about four years ago. It took us a while to realize that she was having jerks, and it was not 'til almost three, four months after we had noticed it that her pediatrician actually suggested that we get an EEG done.

Jay: We have an appointment for a EEG.

Elizabeth Thiele:: EEG stands for "electroencephalogram," and it's a test to look at the electrical activity of the brain, as a electrocardiogram looks at the electrical activity of the heart. We believe an EEG is important to get or obtain whenever a child has some type of behavior that could be consistent with seizures, and that could range from staring in school to walking very unsteadily, to sometimes mumbling with what they're saying. So if a child has any behavior that occurs and is very stereotyped--the child doesn't just do it once, but does it two or three times and it's very similar--we believe it's very important to get an EEG to see if all those behaviors could be consistent with seizures.

Kara Houghton:: Mom and Dad, do you want to come in as well?

Clemencia: I was terrified. The EEG to me was something that I never heard about it and I thought Maya could be traumatized by this test.

Houghton:: I'm going to take out your nice, pretty bows, though, so that I can get at your hair a little bit better.

Clemencia: So the first experience was a little scary, but the second EEG went through easier and we took it much better.

Houghton:: Okay, so let me show you what I'm going to do. I'm going to measure your head. Then I'm going to take this--it looks like it's a crayon, but it's not-- and all I'm going to do is make little real red Xs on your head, and that's going to tell me exactly where I need to put all my electrodes on your head, okay?

Houghton:: If it's the first time that your child's having an EEG, I think the whole process could be a frightening experience, but we try to do a thorough explanation to the family of what the test involves and try to take some of the mystery out of what the child will be going through.

Houghton:: Now, this is going to feel a little wet and a little cold, okay? So I'm going to just place it on your neck, okay? And now what I'm going to do is take a little bit of air here and I'm going to dry it, okay? It's a little bit like you're in a wind tunnel, huh?

Jay: I think the preparation of all the electrodes is most time-consuming.

Houghton:: All right, I'm just going to do the same process now for all the electrodes, okay?

Maya: An EEG is like nothing, 'cause when they're putting the little wires, you don't feel anything. You hear something like the breeze. (air whooshing) It's nothing to be scared of and it just feels really good.

Houghton:: I'm going to take all those electrodes that are on your head, and I have to plug them here into this box.

Thiele:: For a typical EEG, 20 electrodes are placed on the child's head--it's the same for an adult--and where they're placed conform to the different regions of the brain. So electrodes are put on the frontal area of the brain and the occipital area of the brain, mainly to sample the electrical activity from all over the brain.

Jay: This is like a headband.

Houghton:: We wrap the child's head just to keep everything intact, make it a little bit easier to transfer the child from the chair to the bed. If we were going to do an extended EEG, it also helps to keep the cream-- the electrode cream-- fresh so that the air doesn't dry it out.

Houghton:: I'm going to have you come over here to the bed so you can lay down and be comfortable, okay?

Jay: Once her head is prepared with the electrodes, then the procedure itself is pretty straightforward.

Houghton:: Can you close your eyes? Yep, nice and easy--perfect.

Thiele:: The typical routine EEG takes approximately 20 minutes, and during the typical EEG what we like to get is the child awake, the child drowsy and the child asleep, to sample all the different stages as the electrical activity of the brain changes at those times. And then we also do a couple of things called activating procedures, which are things we have the child do that would make it more likely for the child to have abnormalities on their EEG, such as hyperventilating.

Houghton:: Maya, do you think you could try to do some deep breathing for me now? Okay, so you're going to go like this.

Thiele:: So, on a classic EEG, the child hyperventilates for four minutes, because that might bring out abnormalities, allowing us to make the diagnosis.

Jay: Good job.

Maya: During the EEG, there'll be a light over you and the doctor will make you open and close your eyes.

Houghton: Open, open, open...

Thiele:: Another activating procedure is photic stimulation, where a strobe light is flashed at different frequencies, as that can also bring out abnormalities and help us decide, does a child have a particular type of epilepsy.

Jay: The first EEG did confirm that she had myoclonic seizures.

Jay: So they're going to take it off.

Houghton:: We're all done-- yay!

Thiele:: When we look at the EEG and brainwave activity, we're looking for patterns of abnormal electrical activity that might help us say, "Yes, this is a seizure the child is having"; might help us say where in the brain the seizures are coming from and might help us decide what would be the best medication to start the child on to treat the seizures.

Houghton:: So, coming off is a breeze. It won't take us that long to get everything off you.

Clemencia: Now Maya takes two medications. She's seizure free since... for the last six months.

Thiele:: Once Maya's seizures became controlled, the EEG still remains an important tool.

Jay: If she is seizure free during her waking hours for one year, she would go through another EEG and if, in fact, both the sleep and the active times are normal EEG readings, she would then be put on a reduced medication.

Houghton:: Turn around...okay.

Clemencia: We tell other parents that an EEG is a very harmless procedure, noninvasive. No need to worry. It's safe, it doesn't have any side effects. People should not doubt. If their doctor recommends an EEG, to do it--it's safe and very important.

Jay: Are you hungry?

Maya: You mean brunch?

Jay: For brunch, okay...brunch.

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